Hi guys, I had to have an iron infusion on Weds, I did react once again in an unfavourable manner so they slowed it right down, I had 5 vials mixed in 1 litre of saline? and it took 7 hours!!!!! Anyway I really was hoping for a miraculous improvement but I am afraid it hasn't done the trick like I thought it would, I asked my GP today why and she said that as my disease is constantly active (due to intolerance of DMARDS, antiinflammatories, biologics etc) that my body is just totally worn out, I am in tears here as I feel so out of control, I try so hard to be well and it doesn't matter what I do it doesn't help. I am so fed up with it all, I am ok if I do nothing, eben doing a little light housework tires me out completely, I am sick of resting, you can only read so much, watch movies, crosswords, jigsaw puzzles etc, but today my hubby and I called off our little family getaway off, the boys were so excited, we haven't told them yet, I am so fed up of always being the reason we can't so things like that together, sorry, I am having a bad day. Thanks for listening.
Also Liam had to see Dr today as his hip was excruciatingly painful, she said it was obviously swollen and he could only get a 45 degrees lift of his leg. She said she was glad she witnessed it as the paed rheumy doubts it sometimes I am sure. He is always telling me there is no swelling or heat. I told him well I am the one who has to sit up with him all night and watch his pain, and my RD says it is def Ankylosing Spondylitis. Anyhow I reckon because he has reduced his 40mg of steroids over 10 days to 30mg, this is probably why he is flaring. He has put on a lot of weight as he has not really exercised much for 6 months now and he has Cushings syndrome now, I had to buy him a whole new wardrobe and he feels embarrassed. Please continue praying for him , I really do appreciate it. God Bless and Merry Christmas to all, and a safe and Happy New Year too. Love Janie.
Janie I am so sorry that you are feeling this bad. And also for the fact you cant tolerate so many meds that could be helping you....thats darned cruel!